Verses to get you through

It’s no secret we’ve spent a lot of time in the Bible during Violets treatment. Many Bible studies, devotionals and Pintrest sessions lead to the list below. You may notice some duplicates below as Bible versions bring out different emphasis. I’m sure I’ve missed some verses but I hope you find some inspiration in His word, just as we have.

 

Dear brothers and sisters, when troubles of any kind come your way, consider it an opportunity for great joy. For you know that when your faith is tested, your endurance has a chance to grow. So let it grow, for when your endurance is fully developed, you will be perfect and complete, needing nothing.
James 1:2‭-‬4 (NLT) – http://bible.com/116/jas.1.2-4.NLT

Feed your faith, starve your doubts…
If you need wisdom, ask our generous God, and he will give it to you. He will not rebuke you for asking. But when you ask him, be sure that your faith is in God alone. Do not waver, for a person with divided loyalty is as unsettled as a wave of the sea that is blown and tossed by the wind.”
James 1:5-6 (NIV) – https://www.bible.com/bible/116/JAS.1.5-6

Don’t fret or worry. Instead of worrying, pray. Let petitions and praises shape your worries into prayers, letting God know your concerns. Before you know it, a sense of God’s wholeness, everything coming together for good, will come and settle you down. It’s wonderful what happens when Christ displaces worry at the center of your life.
Philippians 4:6-7 (MSG) – https://www.bible.com/bible/97/PHP.4.6

Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
Philippians 4:4‭-‬7 (NIV) – http://bible.com/111/php.4.4-7.NIV

So be truly glad. There is wonderful joy ahead, even though you must endure many trials for a little while. These trials will show that your faith is genuine. It is being tested as fire tests and purifies gold—though your faith is far more precious than mere gold. So when your faith remains strong through many trials, it will bring you much praise and glory and honor on the day when Jesus Christ is revealed to the whole world.
1 Peter 1:6‭-‬7 (NLT)  – http://bible.com/116/1pe.1.6-7.NLT

Because of our faith, Christ has brought us into this place of undeserved privilege where we now stand, and we confidently and joyfully look forward to sharing God’s glory. We can rejoice, too, when we run into problems and trials, for we know that they help us develop endurance. And endurance develops strength of character, and character strengthens our confident hope of salvation.
Romans 5:2‭-‬4 (NLT) – http://bible.com/116/rom.5.2-4.NLT

I can do all things through Christ who strengthens me.
Philippians 4:13 (NKJV) – http://bible.com/114/php.4.13.NKJV

 

And we know [with great confidence] that God [who is deeply concerned about us] causes all things to work together [as a plan] for good for those who love God, to those who are called according to His plan and purpose.
Romans 8:28 (AMP) – http://bible.com/1588/rom.8.28.AMP

God says so many times not to fear!!

For God has not given us a spirit of fear, but of power and of love and of a sound mind.
II Timothy (1:7 NKJV) – http://bible.com/114/2ti.1.7.NKJV

For God did not give us a spirit of timidity or cowardice or fear, but [He has given us a spirit] of power and of love and of sound judgment and personal discipline [abilities that result in a calm, well-balanced mind and self-control].
2 Timothy 1:7 (AMP) – http://bible.com/1588/2ti.1.7.AMP

There is no fear in love. But perfect love drives out fear, because fear has to do with punishment. The one who fears is not made perfect in love.
1 John 4:18 (NIV) – http://bible.com/111/1jn.4.18.NIV

But when I am afraid, I will put my trust in you. I praise God for what he has promised. I trust in God, so why should I be afraid? What can mere mortals do to me?
Psalms 56:3‭-‬4 (NLT) – http://bible.com/116/psa.56.3-4.NLT

Don’t be afraid,” the prophet answered. “Those who are with us are more than those who are with them.”  And Elisha prayed, “Open his eyes, Lord , so that he may see.” Then the Lord opened the servant’s eyes, and he looked and saw the hills full of horses and chariots of fire all around Elisha.
2 Kings 6:16‭-‬17 (NIV) – http://bible.com/111/2ki.6.16-17.NIV

Fear not, for I am with you; Be not dismayed, for I am your God. I will strengthen you, Yes, I will help you, I will uphold you with My righteous right hand.’
Isaiah 41:10 (NKJV) – http://bible.com/114/isa.41.10.NKJV

“Whenever I am afraid, I will trust in You. In God (I will praise His word), In God I have put my trust; I will not fear. What can flesh do to me?”
Psalms 56:3-4 (NLT) https://www.bible.com/114/PSA.56.3-4

Even though I walk through the [sunless] valley of the shadow of death, I fear no evil, for You are with me; Your rod [to protect] and Your staff [to guide], they comfort and console me.
Psalm 23:4 (AMP) – http://bible.com/1588/psa.23.4.AMP

Now to Him who is able to [carry out His purpose and] do superabundantly more than all that we dare ask or think [infinitely beyond our greatest prayers, hopes, or dreams], according to His power that is at work within us, to Him be the glory in the church and in Christ Jesus throughout all generations forever and ever. Amen.
Ephesians 3:20‭-‬21 (AMP) – http://bible.com/1588/eph.3.20-21.AMP

O God, listen to my cry! Hear my prayer! From the ends of the earth, I cry to you for help when my heart is overwhelmed. Lead me to the towering rock of safety, for you are my safe refuge, a fortress where my enemies cannot reach me. Let me live forever in your sanctuary, safe beneath the shelter of your wings! Interlude
Psalms 61:1‭-‬4 (NLT) – http://bible.com/116/psa.61.1-4.NLT

But the Lord stood with me and gave me strength so that I might preach the Good News in its entirety for all the Gentiles to hear. And he rescued me from certain death.  Yes, and the Lord will deliver me from every evil attack and will bring me safely into his heavenly Kingdom. All glory to God forever and ever! Amen.
2 Timothy 4:17‭-‬18 (NLT) – http://bible.com/116/2ti.4.17-18.NLT

For with God nothing will be impossible.”
Luke 1:37 (NKJV) – http://bible.com/114/luk.1.37.NKJV

For the word of God will never fail. ”
Luke 1:37 (NLT) – http://bible.com/116/luk.1.37.NLT

Abraham never wavered in believing God’s promise. In fact, his faith grew stronger, and in this he brought glory to God. He was fully convinced that God is able to do whatever he promises.
Romans 4:20‭-‬21 (NLT) – http://bible.com/116/rom.4.20-21.NLT

When the waves and wind of the storm surround us, remember his faithfulness is in our boat, his name is Jesus

Seek the Kingdom of God above all else, and live righteously, and he will give you everything you need. “So don’t worry about tomorrow, for tomorrow will bring its own worries. Today’s trouble is enough for today.
Matthew 6:33‭-‬34 (NLT) – http://bible.com/116/mat.6.33-34.NLT

No weapon formed against you shall prosper, And every tongue which rises against you in judgment You shall condemn. This is the heritage of the servants of the Lord , And their righteousness is from Me,” Says the Lord .
Isaiah 54:17 (NKJV) – http://bible.com/114/isa.54.17.NKJV

This is my command—be strong and courageous! Do not be afraid or discouraged. For the Lord your God is with you wherever you go.”
Joshua 1:9 (NLT) – http://bible.com/116/jos.1.9.NLT

And without faith it is impossible to please God, because anyone who comes to him must believe that he exists and that he rewards those who earnestly seek him.
Hebrews 11:6 (NIV) – http://bible.com/111/heb.11.6.NIV

Cast all your anxiety on him because he cares for you.
1 Peter 5:7 (NIV) – http://bible.com/111/1pe.5.7.NIV

casting all your cares [all your anxieties, all your worries, and all your concerns, once and for all] on Him, for He cares about you [with deepest affection, and watches over you very carefully].
1 Peter 5:7 (AMP) – http://bible.com/1588/1pe.5.7.AMP

“Every word of God is flawless; he is a shield to those who take refuge in him.
Proverbs 30:5 (NIV) – http://bible.com/111/pro.30.5.NIV

For the word of God is alive and active. Sharper than any double-edged sword, it penetrates even to dividing soul and spirit, joints and marrow; it judges the thoughts and attitudes of the heart.
Hebrews 4:12 (NIV) – http://bible.com/111/heb.4.12.NIV

Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God.
2 Corinthians 1:3‭-‬4 (NIV) – http://bible.com/111/2co.1.3-4.NIV

“Ask and it will be given to you; seek and you will find; knock and the door will be opened to you.  For everyone who asks receives; the one who seeks finds; and to the one who knocks, the door will be opened.
Matthew 7:7‭-‬8 (NIV) – http://bible.com/111/mat.7.7-8.NIV

““Are you tired? Worn out? Burned out on religion? Come to me. Get away with me and you’ll recover your life. I’ll show you how to take a real rest. Walk with me and work with me—watch how I do it. Learn the unforced rhythms of grace. I won’t lay anything heavy or ill-fitting on you. Keep company with me and you’ll learn to live freely and lightly.”
Matthew 11:28-30 (MSG) – https://www.bible.com/97/MAT.11.28-30

Come to Me, all you who labor and are heavy laden, and I will give you rest.  Take My yoke upon you and learn from Me, for I am gentle and lowly in heart, and you will find rest for your souls.  For My yoke is easy and My burden is light.”
Matthew 11:28‭-‬30 (NKJV) – http://bible.com/114/mat.11.28-30.NKJV

God wants to bless us!  God wants to give good things to his children! This includes healing!

For I know the plans I have for you,” says the Lord . “They are plans for good and not for disaster, to give you a future and a hope.
Jeremiah 29:11 (NLT) – http://bible.com/116/jer.29.11.NLT

Give your burdens to the Lord , and he will take care of you. He will not permit the godly to slip and fall.
Psalms 55:22 NLT – http://bible.com/116/psa.55.22.NLT

As soon as I pray, you answer me; you encourage me by giving me strength.
Psalms 138:3 (NLT) – http://bible.com/116/psa.138.3.NLT

Let all that I am wait quietly before God, for my hope is in him. He alone is my rock and my salvation, my fortress where I will not be shaken. My victory and honor come from God alone. He is my refuge, a rock where no enemy can reach me. O my people, trust in him at all times. Pour out your heart to him, for God is our refuge.
Psalms 62:5-8 (NLT) – http://bible.com/116/psa.62.5-8.NLT

In the day when I cried out, You answered me, And made me bold with strength in my soul.
Psalms 138:3 (NKJV) – http://bible.com/114/psa.138.3.NKJV

and to know the love of Christ that surpasses knowledge, that you may be filled with all the fullness of God. Now to him who is able to do far more abundantly than all that we ask or think, according to the power at work within us,
Ephesians 3:19‭-‬20 (ESV) – http://bible.com/59/eph.3.19-20.ESV

Therefore put on the full armor of God, so that when the day of evil comes, you may be able to stand your ground, and after you have done everything, to stand.
Ephesians 6:13 (NIV) – http://bible.com/111/eph.6.13.NIV

I prayed to the Lord , and he answered me. He freed me from all my fears. Those who look to him for help will be radiant with joy; no shadow of shame will darken their faces. In my desperation I prayed, and the Lord listened; he saved me from all my troubles. For the angel of the Lord is a guard; he surrounds and defends all who fear him.
Psalms 34:4‭-‬7 (NLT) – http://bible.com/116/psa.34.4-7.NLT

The faithful love of the Lord never ends! His mercies never cease. Great is his faithfulness; his mercies begin afresh each morning. The Lord is good to those who depend on him, to those who search for him.
Lamentations 3:22‭-‬23‭, ‬25 (NLT) – http://bible.com/116/lam.3.22-25.NLT

So do not throw away this confident trust in the Lord. Remember the great reward it brings you! Patient endurance is what you need now, so that you will continue to do God’s will. Then you will receive all that he has promised.
Hebrews 10:35‭-‬36 (NLT) – http://bible.com/116/heb.10.35-36.NLT

 

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You’ll never really know

I partially wrote this to remember how tough some things were/are. I partially wrote it so others might ‘get it’, knowing some never will. It’s a slightly different view on my ‘I see you friend‘ and ‘pre-admission tradition‘ posts.

There’s a lot that can be inferred or assumed by a nice photo, forced smile or positive post, but there’s also a lot that people don’t see or feel. This post may be a little dark (which is not a place we usually are), but it’s the reality of some of my thoughts and days.

You’ll never really know…

  • The actual risk of infection. Seeing kids who have been isolated in hospital for months, taken to ICU and passed away becomes a real threat.
  • What it’s like to choose quality over quantity of life for your child
  • How hard it is to have faith in God when the medical stats say different
  • How emotionally full and tired we get that…
    • Your capacity to deal with others is zero
    • holding a conversation is difficult
    • the presence of someone else is irritating
    • The right words to describe things just don’t come out
    • You don’t have empathy for what others are going through because it seems like ‘less’ of a burden than what we’re dealing with
    • Feedback is taken as a personal attack
  • That any routine I can grasp is a safe place
  • How hard it is to take your child to hospital to make her sicker than you’ve ever experienced, because you know it will make her better in the long run
  • How important is is to wash your hands
  • What diarrhoea really is until you’ve dealt with the stomach lining and gastrointestinal tract being purged from chemo
  • To be on edge…
    • EVERY time your child coughs, to be on guard, because that’s how vomit starts
    • EVERY time someone near your child coughs, to be on guard, because that’s how viruses and infections start.
    • every night, ready to get up and calm her from bad dreams then sleep on her floor
  • How much we enjoy silence and or own space
  • How to juggle the emotions of the other kids, how much it hurts to not have enough time to make them emotionally resilient
  • What is like to find activities out of the sun because your child has super sensitive skin
  • What is like not to have a swim because your child has a central line
  • What it’s like to wrap up your child in plastic for every bath so their central line doesn’t get wet

 

Waves in my ocean seem like tsunami to others and a drip to some. Perspective and empathy for others is also something I ponder, I may never know:

  • What others go through, children with lifelong or more debilitating illness
  • What it would be like if we were regional and had to travel long distances to hospital
  • What is like for a grandparent to see a grandchild suffer and your child to deal with it
  • What being referred to paediatric palliative care would be like

James has it WRONG!

James 1:2 has it seriously wrong…

when troubles of any kind come your way, consider it an opportunity for great joy.

Troubles are an opportunity for great joy!! I’ll give you troubles! My child has cancer, where is the joy in that?
– Watching her much loved hair fall out…. Joy! Err no.
– Catching vomit… No joy there
– Preparing her for yet another procedure… what can bribe, err reward her with? Joy? no.
– Dealing with the constipation/diarrhea pendulum… Umm maybe the joy of hidden in one of her nappies.
– Sleepless nights.. Joy joy joy

Let me read on (in James 1:3-4), maybe James was joking… They do that in the bible!…

For you know that when your faith is tested, your endurance has a chance to grow. So let it grow, for when your endurance is fully developed, you will be perfect and complete, needing nothing.

Yay! Nothing like having my endurance tested. Being a father of three kids is great and it already feels like an endurance marathon (not that I’ve ever done one of those). But let my faith be tested so my endurance can grow! I guess I can look forward to being perfect and complete, needing nothing at the end of this.

OK, maybe James’ letter want meant for me… Let me look up other verses… My middle name is Peter, he must be a nice bloke, lets look what he’s got to say in 1 Peter 1:6‭-‬7

So be truly glad. There is wonderful joy ahead, even though you must endure many trials for a little while. These trials will show that your faith is genuine. It is being tested as fire tests and purifies gold—though your faith is far more precious than mere gold. So when your faith remains strong through many trials, it will bring you much praise and glory and honor on the day when Jesus Christ is revealed to the whole world.

Nope, looks like Peter and James colluded to write the same thing. So, “trials will show my faith is genuine”, is there an easier way? At least if my faith remains strong through trials, it will bring me much praise and glory and honor. Maybe i should keep reading 1 Peter 4:12‭-‬13

Dear friends, don’t be surprised at the fiery trials you are going through, as if something strange were happening to you. Instead, be very glad—for these trials make you partners with Christ in his suffering, so that you will have the wonderful joy of seeing his glory when it is revealed to all the world.

Umm, nope.. surely Peter had something else, here we go 1 Peter 5:10

In his kindness God called you to share in his eternal glory by means of Christ Jesus. So after you have suffered a little while, he will restore, support, and strengthen you, and he will place you on a firm foundation.

OK, time to dig some more.. Paul wrote a fair bit of the NT, surely he’s written something to the Romans, here we go 5:3‭-‬4

We can rejoice, too, when we run into problems and trials, for we know that they help us develop endurance. And endurance develops strength of character, and character strengthens our confident hope of salvation.

RIGHT!!! I give up. You win Bible! I get it, I need to have problems and trials, I’ll be better for it. I know you’re right, I guess I was in denial.

As you may of guessed, I’ve gone on a bit of a journey with these verses over the last year. Initially they were hard to chew on, but now I truly love them. My favourite is James, which I put up in the bathroom cabinet a few months back so I see it every time I brush my teeth.

Life can be hard. I don’t know for sure if praise and glory and honor awaits, or if I’ll ever be perfect, complete and needing nothing. I do know when I let God carry my burden, things are easier. So this is where faith kicks in, although I don’t know this with happen, I feel, trust and hope it does.

There are MANY other verses I’ve had revelation with over the last year, if I get a chance I’ll share them too.

The most important personal trait

A trait that I highly rate is humility.

We live in a “look at me” and “look at what I have” society where I think humility is lost.

My take on the word is, someone who is humble, no matter what status you have, or where you are, you have time to listen stand up for and help others. The dictionary has a slightly different take on it..
humility

So, here’s the people who I respect for their humility…

Some guys I’ve spent many a night around a table or fire with, we’ve had lots of conversations, some deep, some not as much. You do amazing stuff, you’re not after an accolade, just to help out. Jon, Aaron, Rod, Phil, you guys are an inspiration. Ron, you’re new to this group, but WOW, your heart for the underprivileged and downtrodden is amazing.

My grandfather Cyril, is a man of not many words, but what he goes without to help his family is phenomenal. Words can’t express my respect for granddad. I know he passed this trait onto mum, who would never say she’s special; but she is!

‘It was no trouble at all’ is a common response from someone who has surprised us with a care package or meal many times. It’s also very rare to see her not talking to and helping another family at school, looking for nothing in return. Gretel, you are amazing!

I guy I met at work over 15 years ago, sky rocketed into management echelon in the US. A few months back, he was visiting the office, he took the time to come and have a chat about Violet; he was in awe of me! Really! Wow. He values what is important. Thank you Brad.

Have you ever listened to the words of True Blue? …“Is it standin’ by your mate when he’s in a fight” .. John Williamson is incredible, the number of causes he supports is phenomenal… he reminds me of my Dad, who can’t say no to getting involved and helping in the community. Dad you’re amazing.

Tor, you’re one amazing guy and your family is phenomenal! You’ve gone through so much and were in the middle of a storm, yet you called and offered help, you and Trudy visited and entertained us at your house. Wow. And I know where you get it from, Aunty Vic, there is no keeping you away, your visits and hugs meant a lot, to fit that in-between your how many grandkids, charitable endeavours, and other patients you visited, thank you!

A lot of the field engineers I work with truly underplay their skills.. I understand why. And a lot of the time you’re the smartest people in the room, but oh so very humble when you deliver a tough message.

There are others, I’ve probably forgotten for now, but I’ll try to update this as time goes on.

So, THANK YOU to the people in my life who I respect for their humility. Cheers!

I don’t know what to say

A couple of colleagues pulled me aside at different times over the last few weeks and said something similar to “I really feel for you, I’m sorry I haven’t said anything until now, but I didn’t know what to say”.

To tell you the truth, it wasn’t until recently that I thought about the way I would have reacted if the roles were reversed before Violet got cancer, and it would have been very similar.

I know I wouldn’t have known what to say.
I know I would have stared at a child with a bald head or tubes out their nose.
I guess I would have been in shock. Emotional overload, brain short circuit.

I’m sorry to those that I may have done this to in the past. Some things have no rule books and are just plain difficult to deal with.

So, if you feel you don’t know what to say.. here’s some things I think I’d now say:

  • I don’t know what to say, but I really feel for you.
  • I’m here for you if you need me
  • I’d like to do something for you, what would help (side note: different people have different needs)
  • Smile and wave to a kid with a bald head, they’re pretty much a normal, just look a bit different

Depending on what people are going through, there might not be the right thing to say… the things above might even offend… it’s tough!

In the early days there were things that people said that did rub me the wrong way, below I’ve got went through my head at the time:

  • What are her chances?
    • Really? I’m just coming to terms that my daughter has cancer, no I don’t want to be reminded all the time of her survival rate, I’d like to enjoy her for now.
  • My [insert relative/friend] has cancer, it’s been a really tough few years.
    • What? this will take years.
    • Really? can we just focus on my daughter for a moment before I hear your story.
    • Do you realise that every cancer is different and for a kid to get cancer is much rarer than your 80 year old aunt?
  • How are you really doing?
    • Ummm.. I don’t really know you .. “I’m ok/good” .. but to tell you you the truth I’m so emotionally tired that I don’t really know how I’m doing, and quite frankly aren’t ready to find out.
  • I know someone who’s child died of cancer, would you like me to introduce you?
    • Sorry for being selfish, but right now I don’t care. My daughter is still alive, can I just celebrate that fact and enjoy her before being faced with the reality of what others have faced.
    • Wow, this is real. My daughter could die…. Thanks for throwing that in my face – NOT!
    • It’s only been in recent months I’ve thought of all the kids who’ve come before Violet, who have trialed drugs and passed. I really feel for those parents, but in the early days, it was all about survival.

I forgive all of you for what you say, how were you to know what you said offended. Hopefully I was polite in my response.

 

Now people could say anything to me and I’m ok with it. I’m happy to talk in depth on pretty much any of Violets treatment (or future plans), that’s if I’ve got the time.

A couple of articles that friends have shared in recent months that I felt are too good not to share on this topic are:
Stop Saying “Everything Happens for a Reason”
And, a three part series on Stupid Phrases For People In Crisis. Part 1Part 2: Giving Grace To People In CrisisPart 3: A Final Note For Those In Crisis
I don’t necessarily agree with all, but they’re a pretty good read.

Pre Admission Tradition

Pre Admission Tradition

Over the 300+ days since diagnosis, 100+ nights as an inpatient across 16 admissions there’s a few things I thought I’ve picked up about the way I feel leading up to, during and after a hospital stay….

A week before admission

Yeah! I think we’re back to normal (or have adapted to the new normal), time to take on that next bit of renovation or gardening.

The week leading up to admission

As we subconsciously think about things (sleep deprivation, disruption to routine, juggling the older kids emotions), anxiety creeps in in various ways, usually by getting irritable for no reason.

Everything is normal, there is nothing to see here (kids can sense fear/worry/anxiety)

Ignorant bliss while secretly preparing… The easiest way to explain this is by example… Say last time we were at hospital we ran out of disposable forks and we know the best place for them is at a specific cheap shop, instead of saying we’re just going to the shop to get some forks we make up a story like “I’m going to the cheap shop to get some paper” (knowing full well we don’t need paper). Between us we know the real story.

The weekend/days before admission

Celebrate & enjoy, have favourite dinners breakfasts, watch movies.

Quick, do everything that we could have done in the last 3 weeks now!

Get those monkeys off our back that have been there for months … wash the car, clean the driveway, repair clothes, mow the lawn.

Pack. Colleen has reduced this down from 15 bags to one big bag (+3 bags of craft/activities)

Day of admission

Patient patients. Waiting, waiting, distracting, waiting.

Central line dressing change.

Can we go upstairs yet? In the bed lottery, where will we end up?

Get the bed, unpack, setup, wait.

Get hooked up to medication.

Craft, craft, dance, craft, full house, craft.

Days in Hospital

Sleep deprivation.

Depending on protocol, we’re on edge waiting to catch vomit, change nappies, comfort or entertain her.

Time breaks so we can eat and get coffee.

Juggle older kids school drop off so they have quality time and feel loved.

Find time for self (if possible).

If we’re ‘lucky’ and she’s an inpatient on Monday, we get the ‘pleasure’ of giving her a nasal and anal swab (two swabs, not one 😉). Mondays are more affectionately known as ‘Monday Bumday’.

As the stay gets longer, the hospital food becomes more appetising, the hospital bed is comfortable, the toilet paper is soft and you learn how to sleep and eat in sprints, one day blends into the next. What day of the week is it? Who cares.

We’ve pretty much got the routine of a week day sorted. Drop off kids, swap at hospital, sleep, repeat.

Day before discharge

Meh, one more day to go, don’t bother about replenishing food/craft stocks… Or should we?

Day of discharge

Patient patients. Waiting, waiting, waiting.

Drip, drip, drip. When will this end? WHAT, what do you mean there’s a second flush?

Just when you think you’ve seen the last person there’s one more too see and give going home instructions (oncologist/pharmacist/dietitian/liaison nurse).

Where is the doctor? Will we get the green light to go?

This day can be groundhog day, if something isn’t right and she doesn’t get the green light, its another day in hospital…

If we get to go, woohoo, everyone is happy, another admission over, but the fun doesn’t stop there.

Days/nights post discharge

Balancing the emotions of a very ‘not tired’ 6yo who’s had 2:1 attention and now has 0.5:1 attention (if she’s lucky) against the other two who just want time against the need to catch up on sleep requires LOTS of breathing.

Slow days to catch up and allow Violet time to get back to normal from side effects.

Get familiar with new medication regime.

Often nights are spent sleeping on Violets floor, either to comfort from nightmares or to deal with side effects (vomit/diarrhea/pain). There are definately some similarities between this and having a baby.

A week or so after discharge

Life is back to normal.. or a new normal.

I see you friend…

I see you friend… Swimming with kids… My child has a central line, so showering or swimming is not possible.

I see you friend… On holidays… My holidays have been all used up, filled with sleepless nights caring for my child in hospital. My last holiday was before she was diagnosed, wondering what was wrong, dealing with her whinging.

I see you friend… On a road trip / flight hours away from home… My Child is only allowed to be within an hour of the hospital

I see you friend… Having fun in the sun… My child is in medication that makes her burn even in indirect sunlight

I see you friend… In your active ware doing exercise, yoga, palates … I’d love to have any time to myself to do that

I see you friend… Kicking goals at work.. I’m so tired I have trouble concentrating and focusing on stuff

I see you friend… Playing with your share portfolio and investment house… I cashed in my shares to take more leave and spend with my girl.

I see you friend… With your horrible life, you couldn’t get a seat on the train, your coffee order was wrong, your tire was flat … I laugh at your ‘problems’, harden up.

I see you friend… With your aromatic and slow cooked dinners.. My child runs from smells before she vomits, we’ve been lucky to have a handful of meals together as a family over the last year.

You see me friend… I doubt you’ll ever understand what it’s like. Yes, at times I get jealous of what you have and do. But I love you all the same. This is only temporary.

I see you friend… the silent one who doesn’t post, the one I may not know… I know your problems are bigger than mine, I feel for you, I’ll probably never understand what you’re going through